Just hearing cyberknife and knowing it was for a tumor behind my eye was beyond anything I could imagine. Then I was told it would take 3-4 hours and I would be awake the entire time. This was not an appointment I was looking forward to!
I have to tell you it sounds worse than it is. It actually doesn’t even involve a knife. It’s a robotic radiosurgery system that delivers beams of high dose radiation to tumors with extreme accuracy. No cutting and no pain involved. I was fitted for a mask the week before surgery. For me, this was the only uncomfortable thing about the surgery. The mask is screwed into the table and it’s tight. Here’s a picture of my mask. I see a Halloween costume in T.J.’s future, it’s scary!
They gave me an Ativan before the surgery. I was worried about being awake during this. If they had said we give you ativan before we start I would have had no worries. I remember my mask being attached and getting up. That’s it. I won’t have a new brain MRI until the end of October. I’ll update you when I get results. Waiting is always the hardest. I just try not to think about it and go on with life.
This is a picture of the Cyberknife System. The robotic arm moves to hit targeted areas.
Now for the aftermath. I vomited for 2 weeks and lost 15 lbs. I couldn’t eat. Everything I tried to eat tasted so salty and I would get sick to my stomach instantly. The medical term for this is Dysgeusia. I ate chicken nuggets for two weeks. Now I’m eating fish, rice, cantaloupe, chicken nuggets, cheese on unsalted crackers and cheesecake. My Javiee is still making me juices and I’m keeping them down. I do miss his cooking! Chocolate and red meat are the worst right now. I never thought I’d see the day that I turn down chocolate! I still have days when I’m just completely exhausted. On those days I celebrate going to the grocery store! On the bright side I’m having more good days than bad now! That’s really something to celebrate!
I have to end with a picture of T.J. holding my grandson Jax. I think this is the first time he held him since the day he was born. He was completely uninterested in holding him during the slobber and spit up days. I honestly didn’t think he’d hold him until he was out of diapers. I was so proud of him!
Get out and make some memories!
One day after completing 15 rounds of whole brain radiation I went in for my Oophorectomy. It was an out patient surgery. My surgeon told me the recovery would be easy. I shouldn’t be in pain and I should feel ok the next day. Just take it easy and no heavy lifting.
Here’s what he didn’t tell me. Don’t lay down after surgery.
I went home and went to bed. I woke up the next morning in horrible pain. Not abdominal pain, it was shoulder pain. The gas that had been used to expand my abdomen during surgery had set up in my shoulder. I should have slept sitting up in a recliner and I would have felt fine the day after surgery. I wasn’t told that and I took pain meds and cried with shoulder pain for about five days. It was bad! If this surgery is in your future remember that and you should have a fast recovery. I have four tiny scars from the incisions and they healed within two weeks.
Now for what was hiding in each of my ovaries:
That’s a picture of a tumor that was in my ovary. There was one in each ovary. This is the largest one (2.0 cm). How did a tumor this size not show on my scans? The good news here is that we had it tested and it’s still er/pr+. That gives me hope that the new medication I’m on can work on my bones and lung.
I go in for new scans next month to see if Faslodex and Ibrance are working. I’m a little concerned because my tumor marker keeps getting higher every month. Then in October I will have a new MRI to see what all the brain radiation has accomplished. Until then I’m staying positive and living every good day to the fullest. I’m also sleeping a lot. I don’t know if it’s still exhaustion from radiation or my new treatment plan but there are days when I just don’t want to get out of bed.
I want to send a big thank you to everyone that has messaged, called and came by to share their love. I even received care packages from Australia (I ♥️You Emma!) and from Arizona (I ❤️ You Sally!) You all make my world brighter!
Get out and make some memories! 💕💕
I have survived 15 rounds of whole brain radiation. Initially the hardest part was driving to Asheville and back everyday for a treatment that lasts less than 10 minutes. I videoed a session for those of you that may one day have to go through this.
Whole Brain Radiation Here’s the link
It was a painless procedure. My mask was latched to the table, everyone left the room and the radiation took a few minutes. There was a smell that came with the radiation. It reminded me of Clorox. The first 13 rounds were fairly easy on me. I was dizzy afterwards and needed a nap. I was surprised because I was expecting worse. It hit me at round 14. My forehead and my ears burnt so bad. After round 15 I couldn’t hear and my ears smelt horrible. I was told to take Mussinex to relieve pressure behind my ears. I did that for a few days and didn’t notice a difference. I ended up putting peroxide in my ears for a few days and my hearing is back! I must tell you my oncologist advised against using peroxide. It worked for me. My eyesight also got bad with the last rounds of radiation. I couldn’t read anything! I’m using readers now and I feel them getting stronger everyday. It’s been two weeks since my last round of radiation and the fatigue is extreme. I’m so tired. I just keep reminding myself that it’s over! I have had a hard month!! The day after my last radiation appointment I had my ovaries removed. I’ll do a post on that soon. I’m scheduled for the gamma knife and a new MRI in August. Until then I’m going to get out and spend some time with my guys. I’ll end with some pictures.
This is my radiation mask.
This is one of the Mets to my scalp. Radiation healed all of them. Let’s hope it’s working as well on the inside!
This is a harsh one, but I share my truth with you guys. My forehead after 15 rounds of WBR.
Now for one that shows me on the mend! It’s a wig!
What a week! I’m exhausted, mentally and physically. I had an IV steroid treatment last week to reduce the swelling in my head. I was then put on an oral steroid that I am taking two times a day. I’m not a fan of steroids. I hate not feeling like myself. They make me irritable and nauseous. They make my blood glucose out of control. They have relieved my headache, but I have decided I’d rather deal with a headache. I quit taking the steroids yesterday. Today I slept until 1 p.m. and I’m feeling a little better.
I saw my radiology oncologist, Dr. Smather’s, last week. I really love her! We went over the results of my Brain MRI. She is confident that this is something we caught early and can control. There are tiny spots all over the cerebellum (the back of my brain). It’s almost as if someone has taken a Clorox bottle and sprayed it on my brain from behind. Because these spots are scattered our course of treatment will be WBR (whole brain radiation). I have always known I didn’t want to do WBR. However, this is the plan. This is what I will do. My youngest son is 13. I cannot discount any treatment. I will do whatever I have to for the chance to see him graduate high school. So, here’s the plan…
15 days of WBR starting this Thursday. The following Friday I will leave radiation and then go over to the hospital to have my ovaries removed. While all this is happening I will also be adjusting to the new chemo I will be starting this week. When WBR is completed we will do a new MRI and decide if we can do targeted radiation to the tumor behind my eye or if we will gamma knife it. Geez! I believe this is going to be a hard month!! (understatement of the year!)
My doctors are confident, as am I. I have so much left to do and so many more memories to make! I am hopeful that this is just a temporary setback.
Thank you all for your love and support. I will do my best to keep you updated.💕💕
Here’s a picture of my Javiee and I on our latest road trip. I’m focusing on a family cruise when this mess is over! Take time to make memories!💕
I’ve been a real slacker lately when it comes to my blog. My apologies to all of you that follow it. Until recently my life has been pretty mellow. I’ve been struggling with bone pain from the cold and Femara. My daily number of pain pills went from 3 to 6 or 7 a day depending on the weather. That little pill does a number on my joints! Being in constant pain is mentally draining. There are days when I have to stop and remind myself to just be happy that I’m alive and here with my family. That’s all that really matters! I’ve noticed as the weather gets warmer my bone pain gets better. Maybe I should move to the beach!
I had a PET Scan a few months ago. It came back good. Recently I’ve started having pain in my hip and under my left rib. The rib pain is my biggest concern. It’s progressively getting worse. My pain meds only dull the pain, it’s constant. I had a bone scan that showed mets in those areas. My oncologist referred me to a radiologist. He said I was looking at radiation 5 days a week for a couple of weeks. I had an appointment with the radiologist. She looked at my scans and decided to send me for a CT this Wednesday. She said the bone mets are pretty un impressive and that she needs to know what we’re really looking at before she treats me. Scary! I told my Javiee before the bone scan I really can’t tell if the pain is my rib or under my rib. So that’s where I’m at right now. More scans Wednesday and results Friday. I’ve said it before, waiting is the hardest part!
On the bright side..
T.J. has adjusted to life in North Carolina so well! I know I told y’all he was student of the month his first month at his new school. Well he was also chosen to be in the gifted program and he participated in the Science Olympiad this past month. I’m so proud of him!
My oldest Kori and his other half Emily are making me a grandma next month! I’m so excited to meet this grandson of mine! A few years ago I didn’t think I’d live to see a grand baby! I am blessed!
Kristen is turning 21 next month! I’m so thankful to be here for that!
My Javiee is still the most precious man in the world. He’s still making me juices and keeping my diet interesting. Quinoa meatballs were his latest creation and they were yummy! I’m so lucky to have him by my side. I can’t imagine dealing with all of this without him. He’s my rock. He keeps a smile on my face even on the worst days!
I hope you all are good! I love you all! Now I’ll end with some pics!
That’s T.J. He’s not so little anymore!
Thats my snow letter from my Javiee. Yes, he calls me punk! 🙂 It’s a term of endearment!
That’s my Javiee and I on a weekend getaway to Gatlinburg, TN.
I couldn’t leave out the quinoa meatballs! 🙂